A question i never thought I would ask

[JoannePat]

Hi All, This is something I thought i would never have to ask. My mum is in a CH and has deteriorated massively.

The CH Manager spoke to me in a "not sure how long", kind of way. Dad and I have decided that we don't want her to be pulled around and the CH have asked us to write a DNR/palliative care only letter. I don't even know where to begin.

I know there isn't a template for this kind of letter, but does anyone have any ideas.

Its heartbreaking but at the same time we want to make sure that she has peace at the end.

Jxxx

 

[Helly68]

I think what the home have asked you to do is incredibly hard.
Before lockdown, I met with a community matron to discuss end of life care for my Mum. So much depends on what happens - in her case she started eating again, but she could well stop. The principle we started with, your case sounds similar, is that we wanted to avoid hospital admission at almost all costs. So, if she fell, and broke her hip, we would have to have her admitted, but in other circumstances, if she stopped eating and drinking, we might not consider IV fluids - it is very much based on the situation.
It is a terrible thing to consider and an awful responsibility. Can you have a phone call with the care home manager/GP/other clinician?

 

[JoannePat]

Thats exactly it @Helly68 . We have said, obviously if she broke a hip etc. we would want her treated, but we don't want her unnecessarily treated in a strange hospital by nurses and drs she doesn't recognise.

I have spoken to her the CH Manager a couple of times and she just says they need a letter. She says the GP would also prefer something to be on file.

 

[Izzy]

It seems terribly hard for you to have to create this letter.

I know my situation was totally different but I remember signing something for the DNR but not creating it. My husband was at home, not in a care seating. When he was very ill, in hospital and it was clear that he was in need of palliative care I was asked to meet with the consultant and confirm my wishes re the DNR.

I’m sorry, that’s not terribly helpful but I do feel for you.

 

[Hazara8]

Hi All, This is something I thought i would never have to ask. My mum is in a CH and has deteriorated massively.

The CH Manager spoke to me in a "not sure how long", kind of way. Dad and I have decided that we don't want her to be pulled around and the CH have asked us to write a DNR/palliative care only letter. I don't even know where to begin.

I know there isn't a template for this kind of letter, but does anyone have any ideas.

Its heartbreaking but at the same time we want to make sure that she has peace at the end.

Jxxx

This is of course highly important if understandably very difficult to approach. "Best interests " underlines these decisions and carefully considered discussion between your GP or the clinician(s) palliative care team in question and the Care Home and any " advance directives " made by the person in question. A perspective can be gained from perusing the Mental Capacity Act by those seeking some guidance.

There will be folk on here who will have taken this pathway and can offer their valuable pointers.

Above all, albeit much sounding like a broken record, " best interests " remains a very helpful running theme and can reduce anxiety and a sense of helplessness.

 

[Duggies-girl]

Hi @JoannePat There is a template. Dads GP filled in a proper DNAR form for dad and we also had a care plan that stated that dad would have no treatment for his cancer (he was to frail to benefit) and no hospital stays if at all possible. He could have any palliative treatment that would improve his well being and he did indeed have blood transfusions and antibiotics when they were needed and of course pain relief was given. Basically he was given everything possible to keep him comfortable and happy and he was.

Dad was at home until he died.

Speak to her GP

 

[canary]

The thing is that it has to be written down for the care plan, just you talking to the manager is not enough.
When mum reached this stage I talked to the care home GP and we agreed with the plan that was the same as everyone has mentioned. In this case it was the GP who put our wishes into writing for the care plan. If you really cant draft a letter (and I dont think I could have either) then I would suggest that you speak to the care home GP and ask if he could write it up in the care plan.

 

[nellbelles]

It was the CH GP that approached me then he put it into my husband’s care plan.

 

[Helly68]

Thats exactly it @Helly68 . We have said, obviously if she broke a hip etc. we would want her treated, but we don't want her unnecessarily treated in a strange hospital by nurses and drs she doesn't recognise.

I have spoken to her the CH Manager a couple of times and she just says they need a letter. She says the GP would also prefer something to be on file.

Then if you can talk with GP/CH manager and agree a form of words, but I would say, your response should be caveated by something like "wish to avoid hospitalisation if at all possible but agree to proceed dependent on the situation".
They should not, in my view, expect you to provide more detail than this, with dementia so much is unknown

 

[Jaded'n'faded]

Definitely do it through her GP who will then put full details on her care home notes. You don't need to compose a letter yourself. I actually think it's pretty awful that you were asked to do this!

 

[Baker17]

Hi All, This is something I thought i would never have to ask. My mum is in a CH and has deteriorated massively.

The CH Manager spoke to me in a "not sure how long", kind of way. Dad and I have decided that we don't want her to be pulled around and the CH have asked us to write a DNR/palliative care only letter. I don't even know where to begin.

I know there isn't a template for this kind of letter, but does anyone have any ideas.

Its heartbreaking but at the same time we want to make sure that she has peace at the end.

Jxxx

I was asked about a DNR by my husband’s home, they gave me a DNR form which I filled in and it’s in his file now in case it’s needed in future. It’s not the nicest thing I’ve ever had to do I must admit

 

[JoannePat]

thank you all so much for your kind words and understanding. We hope to visit mum again soon and i will speak with the CH Management/Care Team.

xxxx

 

[garfield3]

What a very difficult thing to wr.ite. I remember dad did one for mum soon after she moved into the nursing home and I remember mum’s Dr had that chat to dad about it.

He was given the form by the nursing home. Hope it goes ok. Sending strength,

 

[BananaSundae]

I agree with @Jaded'n'faded , you shouldn’t be writing this letter. In our case, I discussed the situation with Mum’s GP and the GP wrote a referral to palliative care team and updated DNAR on file. Sorry to hear it’s reached this point, but having an open conversation can really help you with your worries and questions

 

[jaymor]

I spoke to the GP who covered my husband’s nursing home and decided what we wanted him treated for and what we did not and I signed the document His DNAR accompanied him on any admission to hospital from the nursing home.

 

[AliceA]

The charity Compassion in Dying have a very comprehensive form to fill in. Finally answers are collated and a copy registered and copy is for those concerned family, GP etc. Free but suggest donation

 

[Babymare01]

My mums doctor rung me one evening to discuss DNR/Pallitive care only.. It was such a difficult conversation with lots of tears but the doctor was wonderful and very understanding of my tears. He arranged all the paperwork and spoke with the nursing home direct . Please speak to the GP X

 

[JoannePat]

Thank you for all of your kind words. I finally put an email together which they have accepted. The GP has had it translated and it is on her file too. We are in Southern Spain and it would seem things work a little differently here.

 

[cumbria35]

It seems terribly hard for you to have to create this letter.

I know my situation was totally different but I remember signing something for the DNR but not creating it. My husband was at home, not in a care seating. When he was very ill, in hospital and it was clear that he was in need of palliative care I was asked to meet with the consultant and confirm my wishes re the DNR.

I’m sorry, that’s not terribly helpful but I do feel for you.

Our local Integrated Care Community advisor sorted this with us while my husband was still able to understand its meaning.

 

[MaNaAk]

What a very difficult thing to wr.ite. I remember dad did one for mum soon after she moved into the nursing home and I remember mum’s Dr had that chat to dad about it.

He was given the form by the nursing home. Hope it goes ok. Sending strength,

This was what happened with me in that I was asked to fill in a form. Myself and my youngest brother agreed to this but my other brother was sceptical so it was left and in the end when dad was very ill in hospital I phoned my brother and he agreed to it. A few hours later he was at the hospital (he lives about two hundred miles away) and it became a clinical decision. I know it is very difficult but you are doing the very best for your mum.

Hugs

MaNaAk